Hear from parents who have been in your shoes!
“It started with school refusal when she was 11. One day she just didn't get out of bed. Being used to "old school" parenting methods, I came down tough on her. Things escalated quickly from there. She would fly into full-blown rage episodes. She would scream, curse, hit, bite, and destroy everything in her sight. She has jumped out of moving cars, put my car into park while driving, ran away from home, broken TVs, walls, dishes, and doors.
She was suicidal and self-harmed constantly. She tried to drown herself in our bathtub and our pool. She tried to overdose. She was hospitalized four times in one year, and the doctors told me it was time to find a long-term residential facility for her. I refused. I knew there must be a better way.
After lots of research, I found out about brain-based treatment, and I found a doctor to work with. She had been on every med in the book, so I was skeptical. We started the treatment in March. It was a rocky road! Things got worse before they got better. Fortunately, I had guidance from other moms who had been there and her doctor. We stayed the course.
By the end of May, I used the word "stable" for the first time! It's now 8 months later and we are in such a better place. No more rage. No more broken objects. No more self-harm or suicidal ideation. I have my daughter back thanks to this treatment plan.”
“My son was 13 when we first started this brain-based treatment, but we had been dealing with irritability, impulsiveness, and emotional episodes for years. After years of not understanding the root causes of his behaviors, he was finally diagnosed with DMDD, ODD, depression, anxiety, and even had struggled with CRPS.
Before we began this brain-based treatment, we were struggling with school avoidance, multiple rages a day, suicidal ideation, loneliness, and weight gain from ineffective meds. Before starting this treatment, it wasn’t a matter of whether he would be institutionalized. It was a matter of when.
There is no comparison to the life we have now that my son is stable. By following this brain-based treatment, he now enjoys school, makes friends at school, does not physically or emotionally attack his family, does not make threats to harm himself, makes good grades, and engages in social conversations at home. We are no longer covered in bruises. He’s also begun to lose the weight he gained from ineffective meds. I no longer see hospitalization and institutionalization in his future. I see a young man who enjoys being part of this family, and who wants to succeed in life.”
“Things started to change at the beginning of third grade when she was 9 and went from bad to worse in record time. It started with some unusual episodes at home where she flew off the handle for the seemingly smallest things, and we could not bring calm. These episodes became more frequent, lasted hours, and became unmanageable.
Then it translated to school - a place where she was previously able to hold it together. She went from being a good student who had friends and was social to a volatile, weepy mess who missed a significant amount of class time and grew more isolated. I would get calls daily from the school, who had no idea how to help her. She would sit with a trusted adult in the office until I could come to get her.
Then there was the panic and fear. She was terrified to sleep at night. She worried about every possible scary scenario that could happen and it paralyzed her. I would sit outside her bedroom door in tears as I heard her filled with fear about terrorists coming through her windows, people breaking into our home, etc., etc.
Our family was in despair and it took a toll on everyone including her older sister who would sit in her room and cry waiting for things to calm. We called our pediatric psychiatrist almost daily then and felt so hopeless. We tried stimulants, antidepressants, neurofeedback, and after much resistance and out of desperation, Abilify.
Then we decided we needed a fresh set of eyes and started working with a new psychiatrist who came across research from a neuropsychologist in TX that looked promising. He told me about now retired Dr. Matthews' brain-based treatment and we decided to try it. I was skeptical, but within a week of starting, we noticed significant changes. She was less reactive, able to function, easier to be around. I didn’t tell anyone at school, but within days I heard from her teacher who also noticed a remarkable improvement.
Things only got better as we tweaked the treatment. We were not working directly with the now retired Dr. Matthews' team at that time so we were getting most of our guidance from the army of supportive parents I found on a Facebook group who helped guide me and my amazing local psychiatrist.
Fast forward to 5th grade, age 11, and she is doing amazingly well. We have been stable for almost 2 years. The IEP that we frantically put in place during her downward spiral is irrelevant and sounds like it’s addressing another child. She is not without her anxious moments or worries, but she can navigate her way through them and navigate her way through life. We are hopeful that she has every opportunity to lead a normal life, and we are forever grateful to retired Dr. Matthews and the support community.”
“We noticed things were different with our daughter when she was less than 2. We struggled with behaviors everywhere. By 4th grade, things started to change and she was acting out in school, not just at home... By 5th grade, we had more and more outbursts at school and school refusal, which turned into CPS visits and probation and ultimately having to homeschool.
We went through years of different meds and therapy, but nothing worked. Multiple visits to the children’s psych ward, where we got sent home… every time. By 6th grade she was so physically and verbally aggressive that I was covered in bruises, we had holes in walls and doors, and everyone walked on eggshells. I was at my breaking point and couldn’t even get her into residential treatment, because there weren’t enough police visits, and she wasn’t a “risk to others or herself.”
She would cry after every meltdown telling me she hated being like that, and that no one would ever be able to fix her. I fought for 2 years to get BK on this medication combination. It took some time, but it has changed everything for us. She can stop and think before acting or speaking. She’s considerate of others’ feelings. She wants to go and do things, and she thanks me often for fighting for her and finding these meds. I hope more families are able to see these testimonials and feel they can keep fighting for their kids, even though it’s hard… it’s worth it.”
“The brain-based approach has changed my daughter's life and ours. She was born with FASD and meth exposure and was later diagnosed with DMDD. We got her at 2 days old and adopted her at 1.5 years old. Her entire life has been an angry one. She didn't smile for us, wouldn't accept affection from us, or tell us she loved us until she started medications at 7 years old.
She was so easily agitated at all times, that we had to "walk on eggshells'' constantly. She raged when she didn't get exactly what she wanted when she wanted it. This involved crying, screaming, and self-harm by banging her head on the floor. It could be over something as simple as having too much milk in her cereal. Unfortunately, she controlled everything we did. We seriously considered inpatient treatment after she nearly stabbed her sister with a knife because of putting too much jelly on a sandwich.
We went through 9 medications before trying the now retired Dr. Matthews' brain-based treatment. It took months to get to therapeutic levels, but once we did, we saw the amazing girl she was always meant to be. She has been stable for almost a year. She is joyful now, and can more easily control her impulses. She has a good relationship now with her brother and sister. Her constant agitation is gone and she is thriving in school. She can now do chores at home as well, and have thoughtful conversations with us! Our lives have all changed for the better.”
“Our family had gone through hell and back over the last 8 years or so with our 14-year- old twin girls. Each year seemed to get worse than the previous until we finally started the now retired Dr. Matthews' brain-based treatment about 8 months ago. I had heard about it for at least a couple of years on my DMDD Facebook group and had been interested in trying it, but it wasn’t easy finding a doc in our area in New England who was familiar with it and would agree to use it.
Our twins had 6 inpatient hospitalizations over the span of about a year and a half. We had seemingly countless visits from our police department for destruction, violence, and suicidal attempts in our home, and I can’t even count how many times my husband and I would say that we were at the very end of our ropes. Finally, in June 2020, my girls’ psych NP started them on this brain-based treatment. That was after about 6 months of very slowly weaning them off of their antipsychotic med, which had done nothing for them other than causing them to gain a lot of weight and feel even worse about themselves.
The changes were slow at first, and we were also in the midst of a cross-country move as they started on this new regime. And in all honesty, the biggest reason for our move was to be closer to a residential treatment center, where we were planning to take one of our girls. We got through the move to Utah and really started to notice some positive behavioral changes. These new meds, along with a new therapy team in Utah, seemed to actually be working! Long story kind of short, we have now been in our new home for 6 months, and there has been no destruction and no violence in it, not to mention that we haven’t even met the police in our town!
This brain-based treatment has been an absolute lifesaver for our family, and although I wish we had started it sooner, I know that we have learned such valuable lessons over the course of these last years. My girls are regulated much of the time now, and when they do start to get escalated these days, they are equipped to be able to regulate so much more easily and quickly than before.
I’m finally starting to be hopeful about what the future holds for our family, and our girls as well. And this med combination has been the catalyst for so much change for the good. I’m so grateful for all those on my FB groups who have been such a support to me and my family for the past number of years... I literally don’t know if we could have survived without them. Hoping that I can start to pay it forward now, little by little, as our lives continue to become more manageable and peaceful. Thanks for reading!”
“My son had been struggling for years... numerous medication trials and failures, long expensive hospital stays, and expensive behavioral interventions. We had tried many different therapies and visited so many doctors. Nothing seemed to be the answer. We were simply out of ideas. We had endured the judgments of our school. Even caring teachers would say, “I have a bag full of tips and tricks and none work on your son.”
We endured the loss of our friends. Too many barbecues or outings ending in our screaming kid melting down. Too many well-meaning, yet hurtful suggestions that it was “us” “our fault.” Had we tried a behavior chart? We needed to be “consistent.” We had tried a chart, we were “consistent” ... we had tried everything. We had read and applied every paradigm. It wasn’t us. Even our families had stopped inviting us to holidays, visits, weekends, and outings because inviting our little family made their fun time stressful. This isolation had left us just surviving, not living... not enjoying. Our life was constantly lived on eggshells.
We were spending our hours just waiting to handle the next meltdown or avoiding being in public, because it was so hard to manage. And our poor son - sad, irritable, remorseful, depressed, suicidal, no real friends, no ability to focus on education. Nothing was fun. He was always just looking for distraction from his discomfort, the bad thoughts and feelings. He would melt down and then cry how he was worthless, remorseful - not worthy of life. After all the doctors and therapies, he believed he was broken and unfixable. He begged us to just kill him. It was heartbreaking.
I stumbled upon a group of families who had found a brain-based treatment that might help. What did we have to lose? We haven’t been here very long on this journey, but long enough to see that this brain-based treatment has taken away a lot of our son’s sadness and irritability. We are no longer looking at hours between challenges. We are looking at days. My child has more and more of these glimmers of this great kid that we have always known was in there. More giggles. More jokes. More hope. These little glimmers have progressed to days... and these days will hopefully begin to add up to weeks...We have more hope for his future.”
“We adopted our son as a drug-exposed infant and looking back, I can see that there were struggles with him from early on, mostly with getting him to sleep. I don’t remember when the rages started, but I do remember using a tactic I had just learned from a foster parenting class to take him down to the floor and restrain him to keep him from hurting himself or me.
He was in second grade and about the same size as me, and he still feels humiliated by the experience. About the same time, he had a meltdown in class and a psychiatrist diagnosed ADHD and started him on Concerta, a medication that helped him for many years. Unfortunately, he couldn’t tolerate it any longer when he reached puberty and we had to take him off it.
At that point, my son started on Abilify, another medication that is commonly prescribed to explosive children. This too helped, but we had to increase the dose three times, and eventually it lost its effectiveness. My son became obese, developed breasts, and the rages continued. He was miserable, and I dreaded picking him up from school every day. When the stresses of academics and peers and trying to control himself became too much, he would take it out on me, going into long tirades that were awful to endure.
He was cranky all the time and nothing could soothe him. But worst of all were the rages when the littlest thing would set him off. His eyes would get red, he would huff and puff, he would break things and get right up into our faces, curse and yell and scream and threaten. It was like being in an abusive relationship, where you walk on eggshells and hold your breath and try everything you can think of to fend off the next incident. And when your child is a very dark-skinned black male who now weighs 230 lbs, you fear for his safety as well as your own.
We were under the care of a psychiatrist, but we didn’t have a diagnosis. I did some research and talked to the doctor, but he was skeptical. DMDD is a relatively new diagnosis, and our doctor asked ME to explain how it differs from bipolar. Thankfully, when I realized that our son met the criteria, I had found a Facebook group to support parents of children with DMDD, and through that, I learned about the brain-based treatment that Dr. Matthews pioneered with these children.
When I told our doctor what our son looked like when raged, and then collapsed - not remembering any of it - he said, “You’ve just described exactly what a partial seizure looks like.” The idea that the rages stemmed from seizure-like activity made enough sense to him that he was willing to try the treatment medications. With the help from parents who had gone through the process of adjusting the medications in another Facebook group, we set off on our journey.
We watched our son in agony as we weaned him off the Abilify, suffered from adjusting to the anti-seizure medication week after week, and endured psychotic episodes from the wean. It was the hardest time since the beginning, but with support, we persisted. Today, a year into a pandemic, we struggle with our son’s delayed development, symptoms of depression, school refusal off and on, trying to lose weight, and some bad habits from having such low expectations.
But our son is a very different person. No more rages - even when he gets very angry. No more cranky than the average 15-year-old boy. Flexible. Relaxed. Funny - even Loving. I hate to use the word “miracle,” but it might be the best way to capture how different our lives are today, and how much better.”
“My daughter was really struggling before the brain-based treatment. She started having trouble when she turned 4. Temper tantrums that lasted longer than what was typical for a child her age. I recall a specific incident where my 4 -year-old smashed a snow globe into a wall. Her rages increased with age to the point of screaming, kicking, hitting, and throwing things multiple times a day. She was always very sorry and remorseful for her actions afterward, but it became apparent that she wasn’t able to regulate or control her emotions.
On September 21, 2020, we began the brain-based treatment. The results were immediate and life-changing! I won’t say that the journey was easy, but the violent outbursts stopped almost immediately. We still have our ups and downs, but nothing like before. My in-laws have told me, “She’s like a different child!” She is affectionate with them for the first time. I’m so thankful for the brain-based treatment.”
In August 2018, my son was in an inpatient hospitalization 8 hours away from me. He had raged and seriously hurt me. I begged doctors for help. His counselors, therapist, medication doctor, and neuropsychologist couldn't figure out why the meds they had tried over six years had never worked. He had been through every type of counseling available. The doctor overseeing his care told me I needed to give up and send him to an institution and forget about him. He said he was a danger to himself, my family, and society.
I broke, filled out the applications, and packed my car to take my son his things. He was going to the state institution. Two days before leaving, I was desperately searching for answers. I found a small magazine article about the now retired Dr. Matthews and his work. I dug deeper. I found the videos he and Dr. Fisher had made. As I drove 8 hours to see my son for the last time before going to the institution, I listened to the videos.
Tears rolled down my cheeks as I heard for the first time someone who UNDERSTOOD my son! They had a way of treating it! I stayed up all night researching more, watching the videos, taking notes. The next morning I met with his team to discuss what was next. I showed the doctor all that I had found. The doctor chastised me for thinking there COULD be hope! I immediately demanded that my son be released from his care. I took my son home.
A couple of days after getting home, my son and I met with his med manager. I showed her everything. She had never heard of the now retired Dr. Matthews or using the medications to treat kids like my son. I begged her to try. She asked that I allow her time to research them as well. Two weeks later, she called me and agreed to try them, as long as I was okay using the meds assuming the possible risks involved. I agreed. We reached the therapeutic dose of Oxcarbazepine over Christmas break, then shortly after, added Amantadine.
My son went from being one of the kids who spent most of their day in the padded room, and I got called in daily to pick him up. My home was a scary place full of rage and fights. No more. Although I have never been blessed to meet the now retired Dr. Matthews in person, as money wouldn't allow us to travel to Texas; his work has forever changed my family.
I have my son back. Fast forward to January 2022 — my son is now 15 (we had started the brain-based treatment when he was 12 years old). He’s a sophomore in high school and is THRIVING! My family decided to purchase our home in October of 2019. It was in a new town, which meant all new friends, a new school, and a brand-new start for my son. I was apprehensive about the move and wanted to make sure that my son was set up for the best possible chance, as well as preparing for the school he would attend.
I contacted the head of the special education department in the town we were moving to and told her I wanted to set up a meeting with all the teachers and staff interacting with my son. He had been in a special needs enclosed classroom from 3rd-grade to the beginning of 8th grade. He hadn’t been in a regular classroom for years, and I was worried! I sat down and explained what a “bad DMDD” day would look like, explained what happens in his brain during an episode, and watched as the staff looked at me through terrified eyes.
The school decided to put my son in all general education classes, with a study hall in the special education department to help with homework and such. I sat down and talked to my son about what school would look like for him, and with great trepidation, I sent him off to his first day. A month later, we had parent-teacher conferences. Every single teacher praised my son. They told me how respectful, helpful, kind, and amazing he was. They told me that they don’t ever have issues with him, not even a late assignment.
One teacher told me I scared her, and she had prepared herself for a kid who was completely out of control and going to be a significant disruption in her classroom. She ended up telling me that he is one of her favorite students ever. That same sentiment was repeated with every teacher he had. He was behind in his education due to his years in special education and his DMDD being uncontrolled.
He worked incredibly hard to get himself caught up, and by the 2nd semester, he was on the honor roll, something that he’s continued to achieve over the last two years. My son plays both individual and team sports. His favorite by far is basketball. For the last two years, he’s earned a spot on the Junior Varsity 2 team. He gets up at 5:00 am every morning to go to practice without a single complaint. At a game a couple of weeks ago, he scored his first basket. The Junior Varsity and Varsity teams were in the bleachers waiting for their games to start and when my son made his basket, all of the upperclassmen were on their feet, hollering and cheering for him.
The next time-out, the coach brought all the young men down to the court to mob my son and congratulate him. As tears were streaming down my face, I cheered along with them. You see, they don’t know he has DMDD. They’ve never seen him unstable. They consider him their equal in all ways, and their praise of him was out of genuine love for him. His coach tells me that she wishes all the boys would work as hard as my son. He’s the kid at practice that is putting 100% in the whole time, and he motivates the other boys who are struggling. He may not be the best player, but he is the BEST teammate.
My son has made plans for his future, something I never thought would happen. The years of chaos that we experienced made it hard to think that this child of mine would be able to be a productive part of society. I didn’t think he would make it through high school, let alone make plans for a career. He’s going through a program at his school that, once completed, he will be a certified welder and can start working.
Last summer, he had the opportunity to participate in a work program for special needs kids. He worked 4 hours a day, 5 days a week, making minimum wage. He worked outside with Parks and Recreation maintaining the local parks. It was hard work, but he absolutely loved it. His boss praised his work ethic and his performance and invited him back next year. His boss is going to petition the city to allow him a part-time position, rather than going through the clinic with the program he was part of.
When I met with his boss, I was told that my son worked harder and got more done than the adults that had been hired directly and that I had done an incredible job raising him. There are so many amazing things that my son is accomplishing, these are just a few snippets of his life today. He is on the same brain-based treatment that the now retired Dr. Matthews developed to stabilize the brains of kids with DMDD.
We have had to increase one of the medications, which was necessary due to his growth. I can’t imagine how life would look today if I hadn’t found the now retired Dr. Matthews’ research. My son is flourishing. My family is whole. In a couple of hours, I will drive to his basketball game. I will sit in the bleachers and cheer for my boy. I will hold my breath every time he shoots the ball, and I will be ready to be on my feet with the rest of his team should he succeed. I will celebrate him and all his accomplishments. I will silently thank retired Dr. Matthews for his work that has made all of this possible.